calypsois' Journey:

Survivor: Bladder Cancer > Transitional Cell (Urothelial) Carcinoma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 9 years ago, Female, Age: 74

  1. 1
    • calypsois
    • Experience with Transitional Cell (U...
    over 5 years ago
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    Cancer has spread/Metastasized

    Oh No

    When I heard my 5-yr survival chances were not good - I was in a daze - don't think I heard much. I sat there frozen. Later on, cried off and on in private - not so much. (My husband is very sensitive.) Wanted the cancer out of me as fast as possible.

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  2. 2
    • calypsois
    • Experience with Transitional Cell (U...
    over 5 years ago
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    Radical cystectomy with Indiana Pouch, hysterectomy, oopherectomy(?), appendectomy

    Procedure or Surgery

    Expected T2, but cancer escaped the bladder to the surrounding fat and 1 lymph node. I was lucky to have changed doctors, because the original urologist was not concerned and saw no problem in a cysto immediately before. I am very fortunate to be alive, due to this surgery.

    Went as Expected: Agree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Agree
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  3. 3
    • calypsois
    • Experience with Transitional Cell (U...
    over 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Persons undergoing chemo should not forego/delay nausea medications - they work and the sooner taken, the more effective. Take a nap or watch a movie during, if possible. Eat favorite foods as desired after.

    Easy to Do: Not Specified
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
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  4. 4
    • calypsois
    • Experience with Transitional Cell (U...
    over 5 years ago
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    Anniversary

    Celebration

    One year cancer-free - yeay! If only I can do it for another, and another, and . . .

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  5. 5
    • calypsois
    • Experience with Transitional Cell (U...
    over 5 years ago
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    Decision Point

    Should I leave my original urologist or maybe get a second opinion? I had so much pain, bleeding and couldn't walk very far and no answers from doc. He didn't answer my phone calls and nurse said: "he doesn't know what to do about you". Nurse's comment was the last straw - went to a new doc at Cleveland Clinic. I should have left him long ago - just didn't know.

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  6. 6
    • calypsois
    • Experience with Transitional Cell (U...
    over 5 years ago
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    Decision Point

    Which diversion? Robotic? By this time, I had discovered the Inspire website BCAN. Here, I got lots of help: questions to ask the doc; others' experiences; recommendations; more info on the options. I chose the Indiana Pouch - didn't think I could deal with a bag on the outside (also tape allergies) and I didn't have the option of a neo due to a severely inflamed/damaged urethra. I know others who are just fine with the "bag"; it's just not me. Re robotic or not: my urologist wasn't going to do the robot part and the doc who would hadn't that much experience on women. Also my uro stated he had a "tactile" advantage, thus, no robot.

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  7. 7
    • calypsois
    • Experience with Transitional Cell (U...
    over 5 years ago
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    Body part/function

    Loss

    Lost my bladder : ( , but it's working out OK.

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  8. 8
    • calypsois
    • Experience with Transitional Cell (U...
    over 5 years ago
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    Lost loved one

    Loss

    Lost fellow bladder cancer survivor friends on the internet (BCAN and FB) : ( . Very sad and scary, too - they were once in my shoes.

    1 Comment
  9. 9
    • calypsois
    • Experience with Transitional Cell (U...
    over 4 years ago
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    Anniversary

    Celebration

    Wow! Second anniversary. I've made it 2 years! Whew! Got to make it to the 5-year . . . a really good landmark.

    1 Comment